Michele Update --- It's been a while

I love how my loyal "Vanderbloggers" have been following this devastating story I have been posting about my friend Michele. I have been getting emails lately wanting to know what is going on in her world. I had a chance to see her last weekend at her sister Katie's bridal shower, so I got the scoop. I feel so selfish that I didn't know any of this drama was going on at the time and now we can look back and think, "Man, I'm glad that is over with." Michele, you continue to amaze and inspire.

Good luck getting through this one without some Kleenex...but there is a happy ending, I promise ;)

Here is what she says:

I apologize to so many of you who have been waiting to hear an update on how things are going around here. It's definitely been a bit of a rollercoaster to say the least. I don't know that the overall tone in this email will find everyone as upbeat as some of my prior emails simply because I am a bit emotionally drained at this point. I do promise you that I am doing well today on my little Gracie's 5th birthday! So hard to believe I have a 5 year old now!!!

The last time I wrote was 1/21 (where did the last 3 mths go?) and I had just received my third treatment. The oncologist wasn't sure what to expect regarding my reaction and we were all pleasantly surprised at the fact that I did not experience anything more than mild side effects for the following three weeks. As a result, I was able to return on 2/11 to receive my 4th and final infusion for the treatment phase of the clinical trial. Not knowing what to expect regarding side effects, I was happy to once again only experience minimal side effects. On 2/23 I had a CT scan of my chest, abdomen and pelvis and the results were clean! Then, as I approached the 1 month mark following my last treatment, things began to change dramatically. My first symptoms were headaches. An MRI on 3/6 showed that I had a tumor on my pituitary gland. This tumor is benign and very harmless, however was causing blurred vision and headaches. Not at all something I needed to worry about unless it grew larger.

Then, extreme sadness hit Andy's National Guard unit on Sunday 3/15. Three remarkable young men from Andy's unit and one Airman from Arizona lost their lives to a roadside bomb as they returned from a follow-up check-in with a local school in Afghanistan. Andy escorted all four of these fallen soldiers back home to the States. I picked him up at the airport Tu 3/16 and we attended the funerals of the three soldiers from his unit btwn the 26th & 29th. From 3/16 onward I wasn't feeling well at all. I assumed the stress of this horrifying event played an intricate role in my not feeling well, but soon learned that my treatment was the main contributor.

Andy was supposed to leave to go back to Afghanistan on Fri 4/3, but I wound up hospitalized from Tu 3/31 - Fri 4/3 due to side effects from my treatment and luckily we were able to extend his stay until Mon 4/6. At that time I was having severe abdominal pain, complete loss of appetite, nausea, diarrhea, vomitting, etc. They did an endoscopy & colonoscopy but didn't find anything other than gastritis which would actually be attributed to the stress, not the treatment. Nothing was found that explained my symptoms so they sent me home on some meds in hopes that things would improve. Unfortunately I got a lot worse over the weekend. On Mon 4/6 I had a routine follow-up appointment with my oncologist. I felt awful the entire day. Aside from the other symptoms, I started feeling weak, light headed, dizzy, blurred vision and at the appointment my BP was only 88/62. They drew some blood at my appointment and I left to take Andy to the airport. At the airport I was very out of it and actually fell asleep at the gate with Andy while I was waiting with him. The next morning, Tu 4/7 I woke up feeling faint to the point that I thought for sure I was going to pass out. Within an hour I was hospitalized and they determined I was in adrenal failure. The next morning they did a CT of my abdomen & MRI of my brain. The MRI showed that my pituitary tumor had shrunk a bit which was good. The CT scan determined that my chemo had "turned off" my adrenal glands, causing them to fail. The diagnosis of adrenal failure explained every side effect I had been experiencing so they started me on steroids to get my endocrine glands (thyroid, pituitary and adrenal glands) to start working again. This worked like magic.

During the CT to look at my adrenal glands, they caught the bottom section of my lungs and found a spot. Since the CT did not include my entire chest they had me come back that Fr 4/10 for another CT of my entire chest. That afternoon I found out that there were 7 spots between both lungs. I was told that the radiologists were quite certain this was stage IV, inoperable and potentially wide-spread in my body ... it didn't look good. My doctors sent a Red Cross message to Andy who was still in route back to Afghanistan and rushed him home. I picked Andy up on Sunday night, Easter Sunday. Monday morning 4/13 I had a lung biopsy. During the biopsy my lung collapsed partially and I wound up overnight with a chest tube to reinflate my lung (ouch). I found out Tuesday afternoon by the grace of God that it was NOT cancer, but some sort of severe reaction to my chemo. My body was experiencing a severe auto-immune response to my chemo which was causing a condition called pneumonitis in my lungs. I was the first patient in this clinical trial to show such a response. Everyone was shocked, but so relieved. Multiple radiologists had looked at my CT scans and all of them diagnosed stage IV melanoma. It was a miracle and I am so thankful and so appreciative of the fact that we don't have to continue the conversation that took place between my husband and I on the evening of Easter Sunday when we thought it was stage IV.

Andy has applied for compassionate reassignment to get relocated back to a local Army location where he can work for the duration of the deployment as a sort of rear detachment for the unit so he can be here to help me get through these challenges that I have truly attempted to conquer on my own. At this point, the next steps are for me to continue to work with my endocronologist to get my endocrine glands functioning normally without being steroid dependent. I also have an oncologist up at Mayo clinic who has been consulting on my case since I was first diagnosed. In light of the past few months developments, he had me schedule an appointment for 5/4-5/6 to come up to Mayo for some scans and tests to help determine my next steps. I will not be receiving any further infusions of this clinical drug due to the severity of my issues and the high risk of reoccurrence of these issues, but at this time do not know what I will do in regard to further treatment.

The other blessing to Andy being home right now is that his grandmother is extremely ill. She was moved to hospice care today and is not expected to make it through the week. Andy was able to go hold her hand and spend some time with her. She is 96 years old and has lived an amazing life. She is ready now to peacefully leave us and live eternally with Our Father. Somewhat ironic that I was in the hospital fighting for my life at the same time she was praying for God to take hers, but there is meaning to all of this and it is a true symbol of the fact that there is a higher being and He does have a plan for us. We just have to trust in that plan and someday it all will make sense. It is never easy no matter what the age though to watch a loved one struggle.

I will close by saying this ... I know it's a bit cheesey, but take a minute to find those you love around you and just give them a hug today and tell them how much you love and appreciate them. Not one of us knows what tomorrow brings. We have to trust in God, but don't waste the moments he does give us ... please treasure them!

My love to you all and I will try to send another update soon and keep it short and sweet!!
-Michele